Saturday, December 26, 2009

Noel!

This morning started out early.  At about 2 AM, pretty much 2 minutes after Tom and I fell into bed having finally cleaned the house, prepared the meal for today and wrapped presents both our children run into our room wide-eyed and bushy tailed squealing, "Santa came!  Santa came!"  So we got back out of bed and lovingly enjoyed a sweet 2 AM moment with both children on this blessed day.

Bwahahahahaaaaa!  Yeah right.

It went more like this, "IT IS 2 AM!  ARE YOU OUT OF YOUR MINDS??"  I told them to go back to bed and STAY THERE for 6 more hours.  So then I hear my kitchen timer being set.  They actually went into the kitchen to get the timer so they could set it for 6 hours.  This seriously cracked me up and I had the giggles for a good 5 minutes.  Tom turns to me and says, "We got to bed just in time."  No kidding.  10 minutes earlier and they would have wondered why Santa just dumped all their stocking loot on the living room floor.

So an hour later I'm hearing noises.  I get up and both kids are in front of the tree inspecting all the packages.  So THEN we all wake up and enjo.... oh forget it.  "SERIOUSLY!  YOU MUST GO TO SLEEP!!"  "But we already napped!  We're not tired!  Can we just rest awhile?"  "AHHHHHHHH!!!!"

Then at 4 AM, Rachael comes back into my room. "I napped again."  At this point I ordered her in bed with me and we finally slept until 8 AM.  At which point I had to wake them because Grandma and Grandpa arrived and finally, FINALLY it was time to open presents.

First order of business was the stockings and both kids got a nice big bag of pistachios to which Rachael excitedly squealed, "COCONUTS!!"

We settled in for what has got to be the most fun hour of the year.  Gifts exchanged, surprises, excitement.  It's like winning the lottery once a year.  We are so blessed

Okay, so 7 years ago, Tom was deployed to Afghanistan for Christmas and I was alone with just my toddler.  At the very last minute I called some friends of mine and said, "This probably is impractical but I love to cook and entertain on the holidays and this year I'm alone.  Do you think you could come over for Christmas breakfast?  You can come around 10 AM after gifts are opened.  Come in your jammies!  And it's okay to stay just a short time because I know you probably have other family obligations."  And they said "yes"!  I made Baked French Toast, eggs, sausage, bacon and fresh fruit.  It was wonderful and fun and the beginning of a family tradition.  Every year since we have invited one family over to share in Christmas morning with us.  This morning our friends Steve and Lauren came with their son Ben, and my parents brought their friend Sharon over.  I love to share a little part of our Christmas with friends as well as family.

So gifts are opened, new games are played, lego models are being built, plastic crap beloved new toys are being spread all over the house and mommy has napped.  Now it's time to go start a new family tradition called, "See The World's Crappiest Movie Ever Made" on Christmas evening.

I'm going to do all those who read this blog a big favor right now so pay close attention.  Alvin and the Chipmunks Squeaquel, or whatever it's called is the movie equivalent of a really horrible date who thinks he's awesome but is just creepy and not funny and then he leaves you holding the bill.  Except I think I'd choose the bad date.  Yes, it IS that bad.  The only way that it could possibly be enjoyed is to watch it passed out.  Because then at least you'd get a nap out of it.  Which Tom did.  Having said that, the experience was fun because we went with our friends Amanda and Jason and their four kidlets.  Sitting next to them while Jason was tweeting how truly horrible it is and laughing AT the movie, a la Mystery Science Theater style and then giving a near standing ovation when it finally stopped was fun.  Also, discovering that the faces weren't really cut off and the boom mike wasn't actually supposed to be SEEN in half the movie but that the projector was off and half the movie had been cut off was quite fortuitous.  We couldn't figure out why most of the movie had only the eyes of the chipmunks with the rest of the face cut off.  And again, the boom mike.  In MANY scenes just clear as day.  When the credits rolled we couldn't even see them because they were cut off at the bottom of the screen and it was then we figured out that the projection person had messed up.  So what did we do?  Well, as concerned movie patrons who are looking out for the good of all those wanting to enjoy some chipmunks after us, WE COMPLAINED!  "Our movie was cut off and it really affected our enjoyment of this fine film."  And I have zero guilt when I tell you that we got 10 free tickets to enjoy any other movie.  One ticket for each person in our group who was subjected to that awfulness.  Good on us!

I will say, Marc could not understand why we hated it so much.  He was almost offended.  I said to him, "If I made you watch three episodes of the Tellytubbies, how would you feel?"  He said, "Like barfing."  "Yes!  It's exactly like that!"  I'd rather watch Shark Boy and Lava Girl again and if you have seen that movie, you are cured of all curiosity to see just how bad it could be.

So now the family is snuggled in and tomorrow we go about four hours away to visit family we haven't seen in a long time.  I know they will be thrilled to see us and especially Rachael.  It was a sweet day and I'm so thankful we have these times to spend with those we love and to celebrate a King who came to serve and save.

Merry Christmas!

Thursday, December 17, 2009

Sweet Return

About six weeks ago Rachael and I met with Chloe and her mom Missy at MD Anderson.  Chloe is another melanoma patient and it was great to chat with them about what to expect and hear about their experiences with interferon and staying at the Ronald McDonald House.  At one point during our lunch they were talking about when they went home and threw a "Welcome Home" party for Chloe.  It was lovely, we said goodbye and I didn't think much about that particular part of our conversation again.

Until about five days ago.

Some of my friends at the RMH started telling me how excited Rachael was to be going home to her party.  Huh?  What party?  "Oh yes," they told me, "She said she's having pizza and cake and presents and all her friends and a sign and she's very excited about the whole thing!"  Apparently Rachael had been telling everyone who would listen except me about this great party she was going to have.

Reminder folks... Christmas is in less than two weeks and I haven't been home in a month.  And I have to whip together a party?!  So I get on the phone with my friend Amanda, who happens to have four children.  It went something like this:  "I have to throw a party for Rachael and I don't think I have it in me to plan one seeing as I'm not even home.  Do you think you could bring all four of your kids and have them act like a whole room full of people?"

Then I started thinking more about it and frankly, getting a bit stressed about the whole thing and I thought, "Brilliant idea!  I'll just call her teacher and see if her class can throw a little 'Welcome Back' party!  I'll bring pizza and store bought cupcakes and it's done."  Well, apparently Rachael had been talking to Marc too and now HE was all excited about the party so crap!  I have to include him too which means no class party!

So I decide to call two other families that have little girls who are friends with Rachael.  Ironically, she hasn't seen either one of these little girls in several months - which is not terribly unusual once school starts, but she now had a burning desire to be welcomed back by all her people.  "Um, can you come to my house day after tomorrow for a party?"  They both said yes and lo and behold, I had the makings of a party!

Yesterday I went to the store and picked up a "Welcome Home" banner and a small balloon boquet which made Rachael look like a returning soldier as those things only come in red, white and blue.  I pick up some plates, napkins, cups and a bottle of Sprite.  One of my friends called and said, "I bought way too much stuff to bake Christmas cookies with so can I bring some cookies?"  I felt a bit guilty saying yes but that didn't stop me.  Thank you Kim!  I ordered pizza and when Tom got home at 3:30 I asked him to sit down and watch T.V. with Rachael so she wouldn't get up from the couch.  So while they are sitting there absorbed in Word Girl I "decorated", got the pizza driver before he rang the bell and called everyone to tell them to coordinate coming to the door.

The doorbell rings and I say to Rachael, "I wonder who that could be?"  She jumps up to run to the door, does a double take when she sees the decorations and says, "It's probably one of my friends!!"  She opens the door and 12 people are standing at the door yelling, "Welcome home Rachael!"

That moment, the moment that her jaw hit the floor and she was utterly speechless and just felt like the most special thing in the entire world, it was so very worth it.

Tuesday, December 15, 2009

I still do.

Marriage is work.  Everyone knows this, or at least thinks they know it but before they get married they think all the work will just be fun.  The truth is, there is nothing in the world better than a good marriage but it does take hard work.  Tom and I have been been married 12 years and I remember that first year laying in bed talking to him about how lucky we are and how no one in the world could possibly be as in love as we are and we had a conversation one night about the "for worse" part of "for better or worse".  That first year was truly magical but we recognized that life can smack people in the face hard and we talked about if we could survive the worst.  I can't remember exactly how it went but I do seem to recall that we decided it was a stupid and potentially depressing conversation to have and we went on to more fun things.

I wonder what we would have thought 12 years ago if we could have seen the future.  Four major moves.  Geographical separations.  A year of depression for me.  Unwanted deployments.  An incredibly difficult and rarely fun adjustment to parenting a high-needs child.  A year of unemployment.  Near financial ruin.  Major career change.  Both of us working ridiculous hours and our children in daycare in order to keep our heads above water.

Our daughter being diagnosed with cancer.

How would our younger selves have felt about what the next dozen years would bring us?  I think we'd be surprised at a few things but mostly scared out of our minds!  I think we'd be surprised that we aren't more romantic.  I think in some ways we'd want to scoop our present selves up and whisk us back in time to remind us of the fun we had and the absolute bliss of just being in love.  I think we'd be a little sad actually if we were just looking at things from the outside.  And as far as the circumstances go, I think we would try really hard to change them.

But our younger selves would be wrong on all counts.  No, we aren't as romantic and giddy as we were in those early days and many things that have happened were incredibly difficult and even scary to navigate but we have a strength in our marriage and a commitment to one another that offers us so much more.

I'm going home tomorrow and I called Tom tonight and was very honest with him about some difficult feelings I've been having lately.  It was a tough conversation at first but we never got mad and despite a little defensiveness at times, we were very respectful.  Since Rachael's diagnosis there has definitely been some drifting apart.  We haven't argued... we've just not really been on the same page.  No one is to blame and I never once doubted that we will be okay, even though the statistics for couples going through what we've been through are frightening I always knew that we would survive.  But our marriage has felt "off" to me.

So we talked about it.  We talked for the longest we've talked since I left for Houston and once again I am reminded of how lucky I am to have Tom.  We may not always get one another but the shared respect and the bond we have is stronger than ever.  Our younger selves couldn't have imagined that behind the quietness and the crap is a love that is all the stronger because of it all.  I cannot yet say this about cancer but the rest I wouldn't change if given the choice and I'm not sure our younger selves would have understood that.  One thing I did recognize early though is that the work of marriage is a privilege and not a burden.

It is an honor to be your wife Tom.

Rub you.

Thursday, December 10, 2009

It's a good thing.

Back when Rachael got an infection in her drain tube (you can read about part of that crappy week here) I was watching her go through some pretty dreadful and painful stuff and I decided that we would take advantage of the good things cancer has to offer.  Wrap your head around that sentence.  Anyway, we were encouraged to sign up for Adopt-A-Family with the Candlelighter's to help our family with Christmas and at first I was all like, "No, no," and then Rachael starts talking about how she hates her life and there is nothing good and she just wishes she was never born and I'm all like, "Okay, whatever it takes to show her the good side of this we'll go ahead and do."

So I go to fill out the sign up sheet and OH CRAP.  I have to actually write a wish list.  Um... I have no idea what to get her, much less help someone else buy for her!  Not only that but we got to do a wish list for Marc and.... AND Tom and me!  I got a call from one of the staff members and she's all, "Um, you don't have anything here for mom and dad."  Seriously?  Because we were just planning to skip Christmas this year.

But I did manage to pull together a list of a few things and then I get a call from this couple named Tim and Donna and "would it be okay if we stop by today with Christmas gifts for your family?"  Today?!  I just gave my list yesterday.  Wow, you people are good!

So around dinnertime this amazing couple shows up with LOADS of gift bags.  I thought they must be delivering for about three families but they were all for us.  I got teary and said to Donna, "You know, I have just not felt into the Christmas spirit at all this year but this is simply amazing."  She got tears in her eyes too and told me she hasn't felt in the mood for Christmas in seven years.  That's when her son Adam died very suddenly of cancer at four years old.  After that they started Adam's Angels Ministries and she said that giving to kids with cancer is her Christmas.

They had to be at a football game for their son Andrew so we had far too little time to visit and get to know one another but these people... meeting these amazing, caring, selfless, brokenhearted, hopeful, beautiful people... that's the good part of cancer.  Despite the gifts, which were an amazing blessing and will constitute about 90% of our Christmas, just being a part of this family's life, even for a short time is one of those things we can look back to and say, "See Rachael.  See!  It's not all bad!"

Thank you Tim and Donna for giving our family, not just gifts, but a moment we can point to and say, "This was something good about getting cancer."

So we got another blood draw today and lo and behold her counts are back up to 1800!  Thank you for your prayers, God said "yes" to this one.  It was quite freeing really, it was so far out of my hands that at this point I have every confidence that God is in control.  We re-started interferon today and tomorrow will be the last day of high dose.  And tomorrow... this is such exciting news I'm just wiggling in my chair typing about it... tomorrow we remove the catheter!!  See that?!  TWO exclamation points!!  There I went again!!  I haven't been this excited since I got my netbook.

No more dressing changes!  No more dressing changes!!  I think we'll go out and celebrate tomorrow by eating TWO poptarts instead of only one!

Wednesday, December 9, 2009

The Good, The Bad and The Pretty!

Did I spend my first two weeks here whining?  Well let me tell you, that time is over!  I am having such a good time now and I owe it all to some really amazing friends that I have made.  It seems a bit crazy to say what a great time I am having in this house but it is so true.  Despite all the heart ache and our fair share of drama, there is a group of women here who are simply falling in love with each other.

Monday was Jeanne's birthday and we had such a blast celebrating with her all day.  In the afternoon Jeanne and I went out and got pedicures.


Then that night a whole group of us settled the kids in another room with a responsible teenager for a slumber party and we all came to my room to continue the celebration.  I made it my personal mission to get cool pictures of everyone there so let me introduce you to some of my closest friends in the house.

First there's Jeanne who is pure awesomeness.
 
We have known each such a short time but we have already invested a lot in each other.  We are kindred spirits in many ways but she is way kinder and gentler than I am.  Plus she's super gracious and when she reads this she's going to go on and on about how it's not true and I just love her and that's why I'm saying nice things about her.  And you know, it's true.  I do love her.  But I don't say nice things about her because of that, I say them because they are true.  And when (not if!) she writes her memoirs you absolutely MUST buy a copy because you will not believe the things this woman has gone through in her life.

Then we have Payton...

This woman is so stinking cool and I love her because she is just up for anything!  She scared me at first but after her grandson got a liver transplant and her stress level went down a little, I got to know the real Payton.  It's so fun to make her laugh, it's worth your while to get her to cook, and it's easy to be her friend.

This is Susan...

Her life is so complicated and difficult right now but she has an amazing ability to put horrible stuff aside and focus on what matters.  We're all amazed at her strength and want to stand with her in support.

This beautiful woman is Azi...

This was the first time most of us saw her with her hair down and we were seriously wowed by her beauty!  She gave me permission to put her picture on here but she keeps her head covered at all times.  She is Islamic and from Iran and she is here without her husband despite so many people's best efforts to help them reunite.  This woman is a spitfire and she will tell it like she sees it!  She is hilarious and we all just love her.

Next we have Paige...

She is Payton's daughter and it's her son who got the liver transplant.  I never saw this girl smile until after her child's surgery but goodness is it gorgeous.  Paige has had to grow up so incredibly fast but she is calm and so mature.  She has yet to enjoy her baby out of a hospital environment and I know she will treasure that little boy all the more for the time they lost.  And oh my did I mention she is gorgeous?!

Here is my favorite teenager in the world, Rachel....

She and my Rachel have the same last name which we discovered when I got irritated with my Rachael and said both first name and last name.  This Rachel is Jeanne's daughter and Jeanne turns to me and says, "What did you just say?"  Then she says, "That is freaky because that is my Rachel's last name too!"  Told you Jeanne and I are kindred spirits.  Anyway, this Rachel refuses to take a bad picture.  By far my easiest subject.  I think it's because her heart shines through and the camera picks it up.  I only wish my son were about 10 years older and they could fall in love.  I pray for a girl like her to steal Marc's heart.  She is amazing.

This is Joanne...

It takes a lot to get Joanne to open up but she runs very deep.  She is incredibly caring and selfless.  She just jumped right in when we invited her and though she sat back quietly she told us later that she was so glad she came and how much fun she had.  I'm afraid with the limited time I have left I won't get to know her well but what I do know, I sure do love.

I did let them take a picture of me and I'm sure I'll catch flak if I don't post it
.

It was such a memorable night... thank you friends for making the way smooth here.  Thank you for supporting me and letting me support you.  I love you ladies... and that's not the margaritas talking!

So that was the good and the pretty... here's the bad.

Rachael got her blood work done on Monday as usual and part of her white cell count is below the lowest it can go and continue treatment.  The lowest is 500 and she was at 410.  To make a long confusing story short we are waiting now for it to go up over 1000 in order to be able to continue.  If it doesn't go up within two weeks then interferon is off.  For good.  I'm not sure what the next step would be but we're just hoping for the counts to go back up.  I have a doctor's appointment tomorrow when they will run more labs and I'll make sure I update with what I find out.

In the meantime we are just enjoying our time.  Still feeling sorry for us?

Friday, December 4, 2009

I'm okay. You're okay.

Thank you everyone for your encouraging words and it's sweet of you to say I'm not a Scrooge.  Even if it made me want to stick my tongue out and yell, "Am so!"  It's good that so many have faith in me.  My husband in an attempt at solidarity told me that he's feeling the same way and that made me even more sad.  I mean, hey, I get it.  Really, I do.  But what would have made me feel better would have been, "Honey, I've got enough Christmas spirit for the both of us!  Bring on the cheer!"  Is it coincidence that cheer and beer rhyme?  I THINK NOT.  Sorry.  Random thought there.  Back on track.

So there were fun festivities in the house in the past few days.  Curly the Elf, a distant cousin (wink wink) of Curly the Clown showed up to do his balloon magic tonight.  He brought his gorgeous wife with him and she is every bit as talented.  She did these amazing face paintings and if my phone camera would show a larger print I would post them here.  But you'd need a magnifying glass and it would just look like someone threw up on Rachael's face.  Not at all like the gorgeous sparkly butterfly that it was.  One of the kids here has been through chemo and has no hair and she painted the fanciest "Christmas" with holly leaves and berries and sparkles across her forehead.  It was awesome.  Then the kids got to meet Santa and I figured out what to get Rachael for Christmas!  Except not.  When he asked her she said, "I don't know."  That makes two of us kid.

I'm starting to make friends and bond which is fantastic but a little bittersweet.  I can't wait to leave but it will be hard.  It's been a long time since I've invested in a new friendship like this.  One family here has a little girl who can (and usually does) have multiple seizures a day.  Seizures that she must be resuscitated from.  So there has to be someone awake in their room 24/7.  She and her 16-year old daughter take turns so it's usually party in Jeannie's room at 2 AM.  Perfect for a night owl like myself but can you imagine?

This morning I inadvertently created some drama and if you are on my facebook you already know about it and realize how stupid I felt.  Long story short I thought... no, I KNEW my wallet had been stolen.  I had searched everywhere, had Tom freeze my card, put signs up in the elevators, cried in the doctor's office and had the whole house thinking we had a thief among us.  And when I decided to search AGAIN in my car I found it.  But hey, the cry was nice and cleansing so that's good.  Did I mention how idiotic I felt?

Rachael is doing well and we only have six more treatments left.  Tom is supposed to come tomorrow but they are predicting 2-4 inches of snow.  Snow!  Can you believe it?  It will be the first time Rachael has ever seen it and I left our camera at home.

Okay, before I sign off, I want to say something to all the people writing me saying that they are reading and sorry they are not commenting and sounding... I don't know... guilty?  Defensive?  The main reason I did a shout out to those who comment most was NOT to make the rest of you feel bad, it was to alleviate my own guilt.  Some of these ladies write to me almost daily and I pretty much never acknowledge their existence right now.  I just wanted them to know that they buoy me and I appreciate them.  It wasn't to make all of the others feel like I think they don't care.  I know you are reading and that you love us.

Now, let's all have a group hug.

Monday, November 30, 2009

Not quite "Bah Humbug".... but close.

I can't believe we are in the middle of the holiday season.  If it weren't for Alvin and the Chipmunks playing in my car non-stop I could forget entirely.  Thanksgiving was so low-key it was almost surreal.  The volunteers who came in and cooked for the families are really something else and have truly inspired me.  I'm not sure how I will incorporate volunteering in the future... we're just not there yet, but wow do I want to be like these people.  They descended on the house before 8 AM and made a fantastic meal.  And there were so many who were willing to give time in their day, away from their families and their own meal preparations.  And... AND!... they cleaned up afterward!  This was easier than the year we went to a restaurant for Thanksgiving.

My parents came and of course Tom and Marc were here and after a 1 PM dinner my parents left and tryptophan set in and Tom passed out.  For the rest of the day.  He wasn't feeling well so a 9 hour nap was not something I would begrudge him.  It just made Thanksgiving very strange.  We didn't watch the Macy's Day Parade.  I didn't cook.  No pumpkin bread (even the year we went to the restaurant I still made pumpkin bread), no post meal clean-up (not that I'm complaining) and then it was just quiet.

Marc and I hung out and had a great time.  He's at that age I guess, where I vacillate between thinking he's the most amazing and adorable and clever and funny child ever to grace my life and wanting to strangle him.  There's no in between.  And as much as my kids missed each other they sure found creative ways to irritate the snot out of one another when they finally got together.

So, I decided that I wanted to go home for the weekend and despite the drive, which I'm starting to loathe, was a great decision.  It was just good to be away from cancer and sick kids for awhile.  Although I found myself really worried about a few kids in particular.  One made it through a harrowing surgery with flying colors and was all smiles tonight and the other received a new liver this morning and will remain critical for at least 48 hours.  My prayers are with this baby that he will make it and also with the donor family who lost a baby and then made the incredible decision to donate organs so another baby might live.  There are no words for that.

So, home.  It was good.  I saw two movies, got to go to church, visited a friend and her new baby, had a game night with friends, and spent some fun time with Marc.  Oh and we put up our Christmas tree.  Which reminds me again that Christmas is almost here and I have never felt more unprepared.  I honestly just want to cancel it this year and normally I love Christmas.  I just have no enthusiasm and I can't pinpoint exactly what it is.  I'm not unhappy I just don't feel a lot of joy right now.  I know a huge part of it is the fact that my mind is preoccupied a great deal of time with sickness, cancer and death.  Another huge part is just being away from home.  Normally I make a Christmas chain for the kids and they take turns each night ripping a link off.  A visual reminder of how close Christmas is getting.   I'm not home and don't feel like doing it this year.  I'm sorta hoping my kids will just forget if I don't remind them.  Snort.  The other thing that is hard this year is I have no idea what to get Rachael.

None.  Zip.  Nada.

Except overly priced plastic crap that she will squeal in delight over and then never play with for the rest of her life but still manage to spread all over her room.  I'm at a total loss.  Except how about no more cancer treatments?  That would be cool.

Speaking of Rachael's cancer treatment, her blood counts are not high but seemingly stabilized and we are able to continue with interferon.  So yay!  My daughter is healthy enough to continue receiving a drug that makes her irritable and sleepy!  Really though, we are very glad.  And as far as the irritable and sleepy part goes, it's not awful.  People who saw her this weekend were surprised at how great she looks and feels.  And today she said that she felt great after treatment.  Mondays were supposed to be the hard days but she is sailing through so we are truly thankful.

I don't want to feel this way.  I want my children's joy to be contagious.  I want to continue the traditions that we have started and be excited but I'm just NOT.  You know, I thought I'd feel more of the "spirit of the season" when it cooled down.  All weekend the kids wanted Tom to build a fire in the fireplace but it wasn't going to happen with 80 degree weather outside.  "No Marc, we cannot build a fire when we are running the AC!"  But this morning it was freezing cold and instead of feeling the crisp air and joyfully thinking, "Christmas is coming!" I was just cold.

Call me Scrooge.

Tuesday, November 24, 2009

I'd like some cheese with my whine.

This place is starting to fill up with families in for Thanksgiving.  Lots of new faces and luggage downstairs and the place is downright hoppin' at night.  I'm waiting for the kids to fall asleep and then I'm going to go down and play a game with my mom who drove in tonight with Marc.  It's good to have company but stressful having Marc here.  If it were only him it wouldn't be so hard but my two children together are like gasoline and a match.  Pretty harmless on their own but potential within, but put them together and it can be, well, explosive.  And not in a bad way either, although there is that too.  They just feed off of each others' energy and it is impossible to reign in without getting all crazy mommy on them.

Some other women and I were talking about our children last night and one woman said that she asked a black woman once how it is that black children seem to act so perfect.  Now, this is an awfully broad brush she was using here but I do think there is a bit of cultural truth in it.  Many black families do seem to have these children who are very well behaved.  Anyway, she asked this woman and she told this story.

"When a woman is about to have a baby, I tell her, from the beginning, act crazy enough that your child thinks you just might be."

Now, I'm not sure I ascribe to that exact style of parenting but it did make us all laugh and give each one of us a moment of... "Hahaha!....  pause ..... Hmm."

So where was I?  Oh yeah, both my kids are here.  And tomorrow Tom and my Dad are coming in.  And all this is great and Rachael is feeling good and overall we had a good day.  I just feel very out of it.  I mean, I can engage in conversation and talk and even laugh, it's just I don't feel the zest of life.  Which, hey!  That's probably really normal.  This week is going exceedingly slow.

Things aren't as bad as I'm making them seem on my blog.  This is just working out to be my dumping ground.

I want my life back.

Week Two

I'm posting tonight this morning, glad with the knowledge that others in this house do not know I write a blog and read it because I'm about to get all sad for our situation and it's one that many others would be doing backflips if this was all there was.  But for me and my daughter it's hard to see some cold hard numbers about what this "medicine" is doing to Rachael.

She had bloodwork and labs done today and the numbers aren't fantastic.  It's all a bunch of medical blah blah blah but the two numbers they are keeping an eye on are her neutrophil counts and liver function.  The normal range for the neutrophil is between 1700 and 7300.  The last two labs she had done were at 2440 and 2960.  Today it was 560.  Which means she is pretty immune-compromised.  I had thought if we were home I could have sent her to school and gone to work because she is feeling so great but today we were told to not take her into crowds and call immediately if she runs a fever.  So obviously the cesspool of kid-germs school would not be an option.  Grocery stores aren't an option.  And she got a mask, which she hates.

Next week they will test it again and if it's below 500, they will stop interferon and test again that week and wait until it goes up before they start again.  So being here longer looks like a very real possibility.  Which wah, wah, I might have to be here five or six weeks instead of four but it is still very depressing.  I would say that I don't know how the people who have to be here for months on end with no end in sight do it but the truth is, they just do because they don't have a choice.  And it just sucks all the way around.  I find most people sleep all day and one guy spends every waking moment completely inebriated.  It's a house filled with cancer and depression.  Nice place, clean, well stocked, many amenities, pretty but not quite "home away from home".  Unless home is a place that drives you to drink.

Other than her inability to fight off infection, Rachael looks and acts extremely healthy still.  She had pretty much no side affects to today's infusion and she is still eating and awake all day.  Except one thing.  She is extremely irritable.  Extremely.  She has her moments of joy and spontaneous "I love you mommy" outbursts but they are tucked between bouts of frustration and rage.  It's scary because I know we are just at the beginning and I have heard horror stories about how this drug can seriously mess up a person's psyche.  These stories run the gamut from depression to rage that has led to abuse in a man who never showed signs of being abusive to suicide.  Interferon messes with serotonin.  Which is the "feel good" hormone.  So a big part of me is hoping that what I am seeing is normal five-year old angst but another part of me is bracing myself for the storm.

Right now she is sleeping and so beautiful and peaceful.  And in these moments I think, "Tomorrow I will do better by her.  I will play more with her.  I will cook with her.  I will read more to her."  But the reality is when I play with her I invariably and quite unintentionally irritate her and she stomps off saying she doesn't want to play anymore.  And when I cook with her she complains the whole time about everything and there is no joy there and when I read to her she tantrums when I finish because she wants more.  And it won't matter how many more there are.  I want desperately to make this better, easier.  But the truth is she is angry that she has cancer and I can't take it away.  And so she is angry with me.  Because I have told her so many times that I want to make it better.  That I wish I could take her pain away.  That I would gladly take this from her.  But I haven't done that and so she is mad at me.

I just spent the past ten days reading a blog from a woman whose newborn died at six days.  I found her blog while looking for support for my friend who just lost her three-month old.  The situations are entirely different from mine but one thing that really resonated with my life is this idea of "abiding".  Those who were willing to abide, who expected nothing in return but made it clear to her that they were always there and really wanted to know how she was doing are the ones who she leaned on and appreciated the most.  I want to abide with Rachael.  I want to be there with her and for her and expect nothing in return but I'm finding as her mom, her primary caretaker, her nurse, her disciplinarian, this is impossible.  And it makes me so sad.

Rachael, I hope you know how loved you are.  My baby.  My sweet girl. 

Monday, November 23, 2009

Love Fest

I'm not feeling very wordy today and there isn't too much to report.  We had a relaxing day with Tom and Marc.  The siblings were back to normal... you know, irritated that the other is breathing the same air.  When they left, Rachael watched a movie and then I read four books to her.  Something I have gotten out of the habit of doing and she was ecstatic.

I thought I'd take tonight to give a shout-out to my blog cheerleaders... the ones who let me know I'm not posting into a void.  I started this blog to keep a record for Rachael, help me through my feelings and allow me to update those who asked without having to talk on the phone.  But somewhere along the way, people started reading and even commenting.  Thrilling!  As any person who takes part in this naval gazing exercise called blogging, it's way more interesting when you think someone might actually read what you are saying.

So, to my friend Robin... thank you!  You have encouraged me so much and made me feel a great deal better about how I handled certain situations with just a few words.  I love you and you totally win the prize for being my number one blog-cheerleader.  You can put it next to your mother of the year award!

Lone Star Ma... It means a great deal to me that you are reading and care about us.  I liked you from the first day we met about four years ago but it is through this experience that you have come into my life in such a significant way.  Thank you for loving me, mother to mother, through this journey.

Amanda... what can I say?  You are my real-life cheerleader and I love that you leave comments when you could just text me!

Kim.... Thank you for all the encouraging things you have said to me and how you love me even though you know me!

Jenni.... I am so so sorry.  The fact that you take time out to see how our family is doing is humbling.  You are never far from my thoughts as we battle this.

Carrie.... Wow!  I can't believe how you take the time to continuously encourage me.  Thank you my sister.

Lisa.... I've already told you how your love for my family and for me has really touched me in ways I can't even describe.  You are the true definition of the "neighbor" Jesus spoke of.

Connie... I feel like you are the friend who is "abiding" with me.  You have shown me that you are here for me and that is very meaningful.  Thank you my friend and please bug me to have lunch when we get back.

Anonymous.... Sometimes you say the best things and I wish I knew who you were!

I know there are many others who have told me they are reading and who have commented.  And I also know there are others... friends, family, strangers, the computer illiterate who can't seem to figure out the comment thing (I'm looking at you Pamela) who think of Rachael and pray for her and that is what I'm most thankful for.  I just wanted to say a special thank you to this group of ladies who have continuously let me know that they are reading and caring and keep me looking for something interesting to talk about!  I love you man!

Saturday, November 21, 2009

Now if only I could remember where I put my spare car key.

Short term memory loss seems to be a common complaint of parents.  It's got me thinking that there must be some sort of biological need for this phenomenon and I think I know what it is.  Species preservation.  If it weren't for my extreme short-term memory loss my children would be in big trouble because Marc would have been abandoned about five years ago and I would have dropped Rachael off at the local zoo yesterday.  But!  Luckily for short term memory loss I was enamored with my children today.

So yeah, yesterday.  It was a really hard day for a whole lot of really insignificant reasons that when they were all put together in one big suck soup had me in or near tears most of the day.  Rachael acted HORRIBLE all day long.  I mean from 20 minutes into waking up all the way through and I'd love to say I handled it in a manner fitting of my mother of the year award but in fact, around dinnertime I finally yelled, "You are being an ungrateful brat!"  And I didn't even feel very bad about it.

Cancer has made Rachael a bit spoiled.  And some of that is okay because frankly, she has to go through a lot of things no five year old should and if that means she gets a stuffed animal and lollipop just for walking through the door that's okay.  But it becomes a problem when I feel held hostage by her temper every time she asks me for something I won't give her.  Like candy for breakfast.  Her tantrum/sulky mood/deep sighs/frustrated grunts/stomping feet/angry glares/bouts of crying lasted well over an hour when I would not give her candy for breakfast.  And the morning was already tough because of other things so her mood was making it much harder.  And in the afternoon when I decided we needed to bond and have fun together I took her to the Children's Museum and played with her for two hours.  We had a blast and when we left she turns to me and angrily says, "Why don't you ever have gum?!"  I was like, "Huh?" and then she goes on about how she didn't have any fun and she doesn't even like that place.  So that culminated in me calling her an ungrateful brat which I'd venture to say was completely true.

Emotionally I'm struggling.  It's hard being surrounded by cancer all day, every day.  There's a heaviness in this house but even when I'm having a bad day, I can't complain because my bad day means something entirely different from my next door neighbors bad day.  I know I have a right to feel like this is hard and we can always find someone in worse shape, it's just that if you are having trouble losing 20 pounds for instance, you don't complain about it in front of someone who needs to lose 100.  Yesterday I met a mom whose child has a different cancer but much the same prognosis.  He doesn't need chemo so he looks healthy, save some puffiness.  It was absolutely wonderful to talk to her because I felt like I could talk freely about our struggles without being insensitive.  I have friends at home who are very supportive but there is something special about connecting to another mom who is in the same boat.  And for the first time since I got here, I feel like I did that.

And this morning they went home.

It just made me want to cry.  I was genuinely happy for them but I just wish it could have been timed differently.  I think we had the potential to be really close.  Jamye, if you are reading I'm glad you're home but I'll miss you.  And thanks for all the food!

Today though, Tom and Marc came and it was a wonderful day.  We went back to the Children's Museum and the kids were hilarious.  They have this place called Kidtropolis which is basically a city run by the kids.  They have all these centers like emergency services, news station, bank, city hall, grocery store, and restaurant.  Watching them get into the play had us busting out laughing a lot.  Marc, in one week, looks like he has grown so much and he made himself head chef and would make all this food and then send the girls out to waitress for him.  At one point he yells out, "Okay everyone, break time!"  There were just so many little moments with the both of them where we could see how much they are growing up and what kinds of people they will be and it was just fun to be with them.  So I guess I'll keep them around.

God bless short-term memory loss.

Thursday, November 19, 2009

The one where I start out all happy and end up depressing everyone by the end.

I have a serious aversion to clowns.  The week before Halloween, Tom and I went to San Antonio and while we were out walking one night there was a freakishly scary clown walking around and I just about jumped out of my skin.  My heart was pounding and I was hiding behind Tom like a two-year old clinging to her mama.  Even circus clowns freak me out.  I'm not sure where the paranoia about clowns came from but I am not alone as evidenced by the fact that one can buy this t-shirt:



Makes perfect sense to me.  So it is with great pride that I tell you I did not run screaming from the room when Curly the Clown showed up to make animal balloons for the kids tonight.  I could tell there were others who were trying to look very very intently at their food for fear that he would see them and they would die but I put on my game face and announced happily to Rachael, "Look!  A clown!"  I use this game face when getting on an airplane as well because I don't want to pass that particular phobia on either.

Anyway, Curly starts making the standard balloon animals and shapes.  A princess crown, a sword, a turtle and lady bug and then he starts making the really elaborate balloons and I found myself starting to warm up to Curly.  If I were really rich, I would fly him into my hometown to attend my kids' birthdays.  Or just to hang out and entertain me while I make dinner.  My world was opened up to not only see the beauty in a balloon but also to make room for one clown.  But only one.


Rachael is feeling great today.  I can tell she has lower energy but as I'm alone here I'm not minding that so much.  Her appetite has definitely decreased but she is still eating.  She gets headaches but they don't make her cry.  It seems her body is adjusting to interferon and amazingly, she is sailing through.

It's at this point I want to say, "Glory to God," and that is true but I struggle with that.  I'm just typing off the cuff here so go with me for a minute.  What if God does not answer prayers about health as a "favor" as it may be to those who pray but for some other reason?  We have all known of people who were deeply prayed over by many and who remained sick or died anyway.  I think this is what so many people struggle with.  Does God play favorites?  Why bless them but not me?  Or why bless me but allow my friends to experience the death of their three-month old daughter?  I think of the man whom Jesus told to get up and walk, and the man did just that for the first time.  Was there someone who was also crippled who truly believed and desired to have the same done to him but remained lame?  How did he feel?  It just makes me think there must, MUST be some greater purpose to healing than simply to make the sick well.  I don't have the answer.

Cancer is so indiscriminate.  Just in this house there are so many countries represented.  There are middle-class white people like me here.  There are single moms.  There are alcoholics.  But they all have their children here and they all pray for healing.  And some of these kids will die anyway.

How can I claim God's blessings in my life and then look at the 13-year old girl who was just told she has to have chemo and will now lose her hair.  After the surgeries and the radiation burns, now this.  We had a good day, yes, but my heart is heavy.

It's not that I'm ungrateful to God for answered prayers, I just don't understand how or why.

Wednesday, November 18, 2009

10.1" of happiness

Tonight's post is coming to you from my brand new netbook!  Oh how I love thee netbook!  See how excited I am?  I'm using all my exclamation points right here in the first paragraph!!

So yesterday Rachael and I went on a wild goose chase for a cable for the portable dvd player.  This hunt took three hours (this is where yesterday's title came from by the way) and was ultimately successful.  She had been asking all day to watch a movie but the three t.v. rooms were always taken so I decided to bite the bullet and go out in search of said cable.  After three hours and three different stores we finally get back to the RMH and Rachael is beside herself with joy because finally FINALLY she can watch her Barbie movie.

We triumphantly make our way up to the room, plug our dvd player into the wall and yay!  Power!

Except the screen goes black.

No problem!  We'll just turn it off and start again.  Rinse.  Repeat.

Our dvd player is dead.

At this point I'm not sure who is more ready to cry.  We go downstairs in the vain hopes that maybe, just maybe they will have an available t.v. room so she can get her fill of Barbie mind-numbingness but they do not.  Then all of a sudden, an angel appeared from the sky named Gabriel!  No, no.  Actually her name was Bailey and God bless her a million times, she says, "We have a dvd player you can borrow."

I didn't even bother to pretend to be all, "Oh no.  I couldn't possibly."  I resisted the urge to fall at her feet and weep in gratefulness but simply managed, "Oh My God!  Bless you!  Bless you and thank you and yes!"  Thank you Angel Bailey for saving the day.  Next time I make myself a B-52 I will think of you and say a toast in your honor.

So this morning I told Tom that I needed to get a new dvd player and he says, "Would it be worth it to just get a netbook?"  Why yes.  Yes it would!  (See, I can't talk about it without the exclamation point.)  It did mean three more hours of running around.  Can I just ask, who would willingly live in this city?  No offense to the locals, you have nice shops and oh do you love your Asian food but seriously, I'm thinking about limiting my time on the streets to the hours of 1 AM and 4 AM.  It takes 30 minutes to go three miles in this city.  But I navigated it and now I am sitting here typing on my new netbook(!).

I should mention that Rachael wanted to watch a video on it but when we got back, lo and behold, there was a free t.v. room so she got to curl up on the couch watching Kung Fu Panda while I played on my new toy.  Maybe tomorrow I will let her watch a video on it, but only if there isn't a t.v. room available.

Tuesday, November 17, 2009

And on top of it all Houston traffic blows!

I'm sitting here wanting to update but I just don't know where to start.  The past two days have been hard but at the same time, I'm surrounded by people having a harder time.  I told a woman today that in my "real life" people would be feeling sorry for me but around here it's just Tuesday.  She has a three-month old waiting for a liver transplant so yeah, get in line with the sympathy.

I was really hopeful, and a bit in denial I'm sure, that interferon would be no big deal and she would sail through it.  Yesterday they hooked her up about 5:30 PM and she got her first infusion and she was feeling fine so I'm thinking, "Woo hoo!  Home free!"  Oh sweet naivety.

As soon as we walked out of the clinic she started complaining of a headache.  Within ten minutes she was outright crying from the pain of it and I started to get worried.  What do I do?  Is this normal?  They can give a person a huge list of side affects and one can shake her head and say, "Yes, yes, I understand," but until it's your kid who is freaking out with throbbing head pain it doesn't really sink in that the side affects train is headed your way and you can't stop it.  So, I took her back up to the pediatric floor but they were closed down.  I ran into a nice oncologist who said, "Interferon?  Yeah, that's normal."  So, with the hopes that he was right and my child wasn't going to have a sudden brain aneurysm I took her "home".

Last night was not fun.  The headache was followed by stomach pain and that was followed by copious amounts of puke.  I've cleaned up puke before but this was the absolutely most foul smelling vomit I could have imagined.  I'm trying to get it all cleaned up and doing my best to not add to it and Rachael, noticing me dry heaving says, "What are you doing?  Are you going to throw up too?"  I'm all, "I'm trying not to!" and she laughed!  Head pain, stomach aches, puking and she still has it in her to laugh at her mom about to lose her cookies.

After she threw up she got cold.  Really, really cold and three blankets did nothing to help.  She was just shivering and crying.  And the shivering made her puke some more.  So, we finally drifted off a little bit and suddenly she goes, "I feel heavy!"  Heavy?  I didn't read that on the side affects list.  What does that mean?  She, in typical Rachael fashion, gets irritated with me that I didn't know exactly what she meant.  "You know mommy.  Heavy!"  Then she throws the blankets off her and begs me to turn the fan on her.  The room was cool but she was so hot and thirsty and please, please throw me in a bath of ice cubes I'm dying of the heat.

She was so hot to the touch.  So unbelievably hot.  It was at this point that I realize I don't have enough tylenol to last us through the night and - can I be more stupid - I didn't bring a thermometer from home.  And it's 1 AM.  I say to her, "Rachael, I am going to need to get a thermometer and some more medicine.  Do you think I can leave you for a little bit?"  She said okay and with furious prayers that she doesn't have a seizure I go out in search of a 24-hour CVS.  I get back within 20 minutes and thank you Jesus she was okay.  Her temp was 103.1 and this was 30 minutes after I gave her a dose of tylenol.  So I give her motrin and within 20 minutes it started to go down.  About an hour later it was normal and she felt fine.  And we slept.

This morning we get up to do it all again.  Today the symptoms were longer lasting but not as severe.  No puking (yet) but she had a nasty headache all day long and her stomach hurt.  Plus her body hurts and she's cold.  And tomorrow guess what?  We get to do it again!

It dawned on her today that we're going back and what they are giving her and that the two are connected.  This was not met well and at one point she even said that she doesn't want Daddy and Marc to come visit us because she will be sick.  How sad is that?  I assured her she'll feel better on the weekend because she won't have to get the medicine on those days but right now, three days seems like an eternity.

She did get to participate in the Children's Art Project today (it's every Tuesday morning) and this evening she was talking about it as, "Remember what we did yesterday?"  So, the days are long right now.  And it's hard without support.  It's hard to get to the grocery store and do laundry and shower when I have a child who is hurting.  And it's hard emotionally because she is mad and guess who gets the brunt of that?  She told me earlier that she is sick of me being her mommy.  And Tom is discovering it's hard running a household and taking care of a child who has homework and getting everything done when one works full-time.  This would be easier to handle at home but I do not regret or doubt the decision because the long-term benefits will outweigh this hard time.  But it's still hard.

I want to get her in school but she's in no shape yet.  Tonight she was lying on the couch while five little girls around her age were running around squealing and having a blast and she had zero desire to join them.  She wanted to be here so bad and enjoy it but she just feels like crap.  It's so sad.

For the first time, I'm really feeling like I have a child who is fighting cancer and though there is compassion here, sympathy is something that others cannot spare.

Sunday, November 15, 2009

Temporary

In the words of Rachael, "Tomorrow is the big day!"  Poor thing.  She's actually excited.

I can sort of see that though.  Starting means we're getting closer to ending.  We are all looking forward to removing the catheter and we have to use it for what it was put in for before we can do that.  The Ronald McDonald House is really special and I know she's excited about that.  I just pray she feels well enough to enjoy it.  We leave around 10 AM and I am updating my blog because I'm supposed to be packing and it rates up there with my top five least favorite things to do.  Like eating peas.

I wanted to write about something here because I don't want to forget it.  I want to be able to go back and read it again and in my sharing, maybe I'll give someone else something to think about.  This morning our pastor talked about heaven.  I cannot possibly do justice to all he said but there were a few things that were new to me and had a great impact.  These are the parts I told my kids.

"Hey kids, Pastor Micah talked about heaven today and it was really awesome!"

Marc:  "Is it true that in heaven the streets will be made out of gold?"

"Funny you should mention that Marc because Pastor Micah was saying that gold is the most precious metal we have on Earth and can you believe that THAT is what they use to fill the potholes in heaven!  Imagine if the stuff we walk and drive on and hardly even notice is gold how much more beautiful the rest of the place will be."

Kids:  "Whoa."

"Yeah, and you know, God took six days to make the Earth.  You've been on top of a mountain before, think of how beautiful it is.  And the sunset!  Isn't it gorgeous?  Well, imagine if God did that in six days what He could do with eternity?  Imagine how beautiful it must be!  You know how fun Disney was and how they just thought of everything?  Well, men made that place in about 50 years and this is God we're talking about!"

"Wow!"

"Yeah, and remember the absolute most fun and amazing thing that's ever happened to you.  Well, the most boring thing in heaven will be even better than the most incredible thing here on Earth!  And kids, in heaven we won't ever be in pain or feel lonely.  And also, everything will be brand new all the time!  There won't be anything old!  And it's real!  It's a totally real place!"

Micah said it's our home and that God is preparing a place just for us.  I've never been so excited to go.

There was a reason I wanted to tell my children about this place called heaven.  Tuesday night when I was laying in bed with my kids we got to talking about God and heaven and I asked them, "How do you think you get to heaven?"  They both said something along the lines of, "I try to do good stuff like go to church and be nice to people."  I was able to share with them both that night about the awesome power of God's grace and how they can't work their way there.  That the only way to get there is through the power of the resurrection of Jesus.  I used simple language and answered their questions along the way but I was sensing understanding, particularly in Marc.  I said to him, "Marc, is this something that you want?  To give your heart to Jesus?"  He said, "Yeah.  Probably in about 10 years."  I said to him, "You know, you can say a prayer and ask God to forgive you for the bad stuff in your life and to use his power to forgive you and save you.  You can say this prayer alone or I can help you.  You don't have to wait."  I totally expected him to say he would think about it or maybe later but he was like, "Yeah!  I want to do that."  So I led him through that prayer and he was so earnest and sincere.

When we finished he was choked up but he had the hugest smile on his face.  He was completely and uncharacteristically happy.  He said, "Mommy, I feel like I can breathe for the first time in my life!"

Wow.  WOW.

I told him, "Marc, I want you to know, that prayer has changed your life and you will never have to say THAT prayer again.  God wants you to know more about Him and to talk to Him everyday but from this day forward you are a Christian."  He jumps up and says, "I'm a Christian?!  I'm a CHRISTIAN?!!"  Rachael gets up and yells, "He's a Christian?!  I WANT TO SAY THAT PRAYER TOO!!"  So we ran and got Daddy and led Rachael through that prayer and my children were jubilant.

And Marc in particular is changed.  Put it this way, when we got back from Disney I asked him if he told his classmates about his trip and he was like, "Not really."  But Wednesday after school he told me that he was telling everyone there that he is a Christian now.  He is so excited.  The only time I have seen anyone this stoked about their new salvation was when Tom first understood and believed. 

Marc is still Marc but he seems gentler.  Kinder.  He has a desire now to care for others and he wants to talk about it a lot.  For those who know him, this is really huge.  And he really REALLY wants to get baptized.

Hearing about their future home today was thrilling and I praise God for His love for my children.

Friday, November 13, 2009

Best laid plans and all that.

This has been one full week.  Yes, indeed.  Thursday and Friday were totally full.  What?  Those two days don't constitute a week you say?  Well I say OH YES THEY DO.

Tuesday I get a call from MD Anderson saying, "We're just reminding you of your appointment on Thursday for labs and blah blah," and I say, "Well, we're starting interferon that day too, right?  I mean, I've got my whole life planned out for starting interferon so that is what's happening, right?  RIGHT?"  The appointment calling lady had no idea what I was talking about so she calls Dr. H.'s nurse and she says, "I'm not sure, let me talk to him and call you back."  About an hour later she calls back and says, "Rachael is just coming in for an assessment before she starts treatment and then we'll start on Monday."  Ohhhhkay.  Again, everything planned out already but I can go with this.  After all, it means I don't have to go home and pack for a month because I have a whole other weekend at home which is nice.  On the bad side, it means I have to drive to Houston Wednesday night and turn back around for home on Thursday and then go back again on Sunday.  But that's okay because hey, it's a whole weekend at home!  Including Friday when I can get all packed and relax and it will be so nice (this is ominous foreshadowing, by the way)!  That was especially good news because I had been feeling not well and a couple extra days to relax might help me feel better.

So we get to the clinic on Thursday and it seems that our decision to do the trial of interferon came as a bit of a surprise to them.  I want to tread carefully here because I know Dr. H. reads this blog so I won't use all caps and use creative language when describing my frustration but I had felt pretty confident that I had informed them more than once of our decision and it seems that this appointment might have included more than just some blood work if there was any protocol that needed to be completed before starting.  But when I get there I guess it suddenly became real to them and so they had to call in a bunch of favors and drag people over who weren't even scheduled to work the clinic that day to get Rachael into all the other places she needed for tests that were prerequisites for the trial.  Bottom line, I thought we would be leaving for home around 2PM on Thursday and was informed around noon that we had appointments scheduled for the next day.  Furthermore, to make sure she got everything done, "Why don't we just delay the treatment for one week."

Let me reiterate - my whole life is planned out already for this month!  (See that, I went bold instead of crazy caps.  Restraint!)  My husband has changed his work schedule.  We have plans for when I'm supposed to get back.  I understand there may be complications that might delay us anyway but I don't want to guarantee the delay from the outset.  And why didn't anyone figure out I was going to need this stuff before I showed up?!

So, in the past two days Rachael had her pupils dilated and was examined by an opthamologist, she had a lung x-ray, an EKG, an echocardiogram, a CT scan and a PET scan.  And because of said favors and doctors being called to the clinic there was a lot of waiting.  And normally I'm really okay with waiting but I guess the combination of being totally unprepared for the extra appointments (the ONE time I don't bring the DS or even books!) and feeling increasingly more sick and the lack of sleep because of being sick I did have one not-very-proud moment where I threw a little temper tantrum with tears and everything.

But we got it all done and we can go ahead with interferon on Monday.  I sorta missed out on my "relaxing Friday" though.

Now for the cool stuff that happened.  We got to meet another little Melanoma Warrior, Chloe and her mom Missy.  I've mentioned Chloe before here and though we didn't have much time together it was really fun for the girls to meet.  Chloe is an amazing wealth of information and her mom is very encouraging.  She said several times, "Once all the testing is over it gets really easy."  Let's hope Rachael's experience is like Chloe's was!

The other amazing thing we got to do is spend the night at the Ronald McDonald House.  This place is FREAKING AMAZING!  Let me just say, I hope I have visitors this next month because to keep the greatness that is the RMH to ourselves would be a darn shame.

I have so much more to share but that little sickness I was feeling a few days ago has turned into a full-fledged kick my butt illness.  So, I've taken my newly acquired antibiotics and I'm going to go to bed.  I will start updating more again now so I'll fill in the rest of the week - which had some truly amazing moments, over the next few days.

Sunday, November 8, 2009

Tears and Joy... intermingled.

I could not bring myself to journal this past week as I mourned for my friends.  Their loss hit me pretty hard and my sister in-law said it is because I cannot help but project my feelings about Rachael into a little.  I'm not sure if that's true.  I think it's devastating enough without having to project but the way I process grief seems to be a little different than others, so maybe that is true.  I do find it easier to grieve for others than for my own.  I don't know if that's normal but it's my way of coping, I guess.

This week feels like it is headed towards us like a freight train.  Rachael and I leave on Wednesday for Houston to start the one-month, high-dose interferon.  It's the right decision to go there, of that I'm convinced, but as it gets closer I'm having some serious ambivalent feelings about going.  I'm pretty much ready for this to be all over and in a way it's just starting.  It's hard to not resent it a little especially when she is completely healthy looking.  As of September 24th when they removed all her lymph nodes and they came back clear she is "NED" or "no evidence of disease".  Which means, from what we can see, she is cancer free.  This next year is preventative and if it weren't for the medication she will be taking, our lives would return to normal.

I know that there is a chance of re-occurance, but I will not live my life waiting for it.  I think what I have now is perspective.  Rachael is not dying.  She is happy and healthy and to waste energy thinking about it any other way is almost disrespectful of the blessings we have.  If that changes in the future, we will deal with it then.

Now... drumroll please... presenting my little birdie (or as we affectionately called her, our "Flamboyant Little Gay Peacock"!)







This year Marc designed his own costume.  He was going for "Psycho Ninja".  I'd say he pretty much nailed it.






Joy... tears... It's hard to process it all.  I am working on thankfulness.

Thursday, November 5, 2009

Heaven Is The Face

Driving to Houston this morning I heard this song for the first time.



To all those who have lost a child, my heart is broken tonight for you.

Heaven is a place where there is no more goodbye 
And no more not enough.

Tuesday, November 3, 2009

There will not be a new update for at least another day.  I will be attending a funeral tomorrow and I simply don't have it in me to chronicle everyday things right now.

Our family is doing very well though and I will show pictures of Halloween when I post again.

Sunday, November 1, 2009

Brokenhearted.

Yesterday was an incredibly emotional and difficult day.  A close friend of mine lost her 3-month old granddaughter very unexpectedly.  She was a little sick and went downhill faster than they could help her.  There are no words.

You know how people say their hearts are heavy?  Mine felt like it was in a choke hold all day.  The kids were so excited about trick-or-treating and getting dressed up and there were things to do but I just wanted to lay down and cry for this family.  Please pray for them.  I spoke to the mom today and she said, "I just miss her so much."  God.  I can't even formulate a prayer.

I will show you the kids' costumes but I need to give it another day.  Hold your babies and be thankful tonight.

Saturday, October 31, 2009

Random Photo Friday

Catchy title, eh? Like maybe some sort of thing I'm going to start and every Friday you'll check on here and find a random Friday photo.  Or not.

Truth is, I don't have too much to journal about right now and I'm not complaining!  Besides the fact that the third grade is trying to kill me (seriously?  Seriously?!  Four... count them... one, two, three, FOUR big projects due in the next couple weeks!) our lives are pretty normal right now.  Hence, a random photo rather than an update.

This photo was taken a few days before her surgery to remove her lymph nodes and place the catheter.  We knew it would be our last opportunity to hit the water for awhile so we broke out the new cool SPF 50 swimsuit and hat, slathered on a ton of sunblock and headed to the ocean.  This picture was taken before Rachael got stung by a large jellyfish, hitting both arms and across her chest and leaving scabs that continued to swell up a month later.  But nevermind that sad bit of information and enjoy the beauty of the before shot.



And just because they are gorgeous and I love them, here's a picture of my men.



So there are my random Friday photos.  Of course, technically it's no longer Friday but I have not gone to bed yet so I'm going to count it.  Tomorrow.... well, later today, I will present a visual for the reason behind my late night.  Can I just say right now though that Tom and I cannot wait to see a certain little girl's reaction to our labor of love?

Tweet tweet, ya'll!

Wednesday, October 28, 2009

Who is this hip child living in my house?!

So, I broached the subject of GHOST! SCARY GHOST with Marc and no joke, he looks at me and says, "Mommy, ghosts are SO last season!" Oh, excuse me Mr. Vogue, I had no idea you were so in tune with the latest Halloween fashions.

At least he still called me Mommy.

Big Bird and Boo!

A few months ago Rachael found a masquerade mask with feathers and sequins in my closet.  Before my mother goes, "I don't want to know anymore!" let me assure you that it's been there for years from when Tom and I were invited to some sort of party.  Probably a masquerade one.

So, she finds the mask and I say, "Hey, we should have you use this for Halloween.  You can be a bird!"

Oh stupid me!  So now, like five months later Rachael wants to be nothing but a stinking BIRD for Halloween.  I've been trying to talk them into being ghosts but where last year that would have been like, Totally Cool! this year her mind is made up.  A bird.  All I can say is thank God Tom knows how to sew.

I did manage to find a homemade bird costume that looks really cute and the lady claims she made it in one night.  So maybe we can pull it off in three.  Marc hasn't decided what he wants to be yet but I'm really going to try to push the ghost angle.  "Nobody will know who you are!  It's the perfect disguise!  You can go in only your underwear underneath!"  What might tip the scales in my favor is if I tell him it's scary.  We've always had the policy that we do not allow scary costumes.  I know we had a reason for this in the past but this year I'm just tired and GHOST seems like such an awesome idea!

I was telling my friend Amanda that I get these comments about how wonderful I am and though I love to read them, I feel like you don't get the full story.  I told her I need to write about some of the lousy stuff I do.  So there you go folks.  I waited until the last minute so I am going to go against my principles and ask my son to be a scary ghost for Halloween.

I realize that's a pretty lame "lousy" thing but I don't think the internets are ready yet to hear about the time I tried to guilt my mother into making a bird costume for Rachael by saying, "But mom... she has cancer!"

Monday, October 26, 2009

My Best Friend

Tom and I decided that we needed some time alone to reconnect and have fun and refocus on each other.  We sent the kids to stay with Grandma and Grandpa for the weekend and headed to San Antonio.  Last time we did this was a little over two years ago when we celebrated our 10th anniversary and we are both so glad we did it again.  It was relaxing and fun and we barely talked about the kids at all.  I told my mom this afternoon that we were flirting with the idea of just not coming back and she said, "Flirt all you want as long as you show up."

Tom and I met a little over 13 years ago and I knew immediately that I never wanted to be far away from him.  I wasn't looking to get married as I had somewhat recently gotten out of a relationship that pretty much destroyed my faith in myself to make a good choice.  But I was so drawn to him.  We worked together and as I got to know him better, I began to feel such a pull that it was nearly painful.  About six months later he finally clued in to the fact that I am totally awesome and he wanted to be with me too.

What I love about our marriage is that we both still feel so lucky to have one another.  I was talking to a friend recently about how usually in a relationship one person loves more than the other.  I spent a good amount of time thinking about who that is in our relationship and I don't think there is an answer.  I think Tom loves marriage more than me.  That's not to say I don't love marriage but I still sometimes think it would be fun to be single.  I wonder what my life would be like.  Not Tom.  He would never want to be single again and I know if something were to happen to me, he would most likely remarry.  And I would be happy for him because I know that in a way it would be honoring to me.  Our marriage is such a safe haven that he would desire that again.

I love marriage but for me, it's marriage to HIM that makes it so sweet.  It's hard to describe my love for my husband without making the internets want to collectively puke but the same things that drew me to him that first moment continue to do so everyday.  How could I have known back then?  It astounds me.

For us, it comes down to this;  We never, ever doubt that we love each other.  We never doubt that we don't want to hurt the other.  Sometimes we do, but we know it's not our intention.  We want the best for each other.  We respect each other immensely.  We make each other laugh.  We have fun and act goofy and still find new ways to enjoy each other.

We have been through major career changes, four long-distance moves, buying two houses, unemployment, financial crisis, and now, a child with cancer and our marriage is so strong for all of it.

This weekend we went to a comedy show and one of the comedians was asking how long couples had been married.  One couple was married the longest at 30 years and the comedian was practically in awe of it.  He was going on and on about what an accomplishment it was and how he could barely wrap his mind around it.  Words cannot express enough the peace that comes from knowing that if, God willing we are both still around, we will see 30, 40, 50 years or more together.  Marriage is work and life along the way makes us both realize that we do have to be vigilant and continue to protect it but it is so sweet.

Thank you for marrying me Tom.  I am the luckiest girl.

Thursday, October 22, 2009

At least it's not a six-month deployment to Iraq.

Tom and I have made a difficult decision this week that seems a little crazy on the surface.  We have decided to do the high-dose IV interferon in Houston.  Which means that Rachael and I will basically be moving there for a month.  I have many reasons for wanting to do this, even though it means we will be separated and financially it is scary but it comes down to this:  We cannot make decisions that we will later look back on.  This is a common refrain, especially among Melanoma Warriors because so much of the treatment has mixed results at best.  We have to make decisions we know that we will not be able to regret.

We have been offered a trial for Rachael's treatment of interferon.  The standard way of administering it has been four weeks of high dose through an IV, followed by 48 weeks of a subcutaneous injection done three times per week at home.  The trial would mean the same high dose IV, however the "sub-q" injections would be done only once per week and the intereron would be "pegylated".  I asked her oncologist, Dr. H. what this means and he said, "pegylation is a chemical process that prevents a medicine from being cleared from the body as quickly."  He said that he believes the 3x per week injection is actually out of the system within a few hours but he thinks they will find that they pegylated interferon stays in the body throughout the week so that she will have at least a low dose in her at all times.

Are there any chemists out there who can explain all this to me?

This trial appeals to me for many reasons.  First of all, there is mixed research about the effectiveness of continuing after the one month high dose.  The results of going ahead with the additional 48 weeks do not seem to offer much additional benefit.  Having said this, her oncologist, as well as the oncologists of the other parents I have spoken to who have children with melanoma all believe we would be crazy to not do it.  I've actually written about my angst regarding interferon here.  So the idea of a trial which Dr. H. has said it is essentially the same medication and they expect it to perform much the same way and which might just show better results and saves Rachael 96 injections over the course of a year sounds like something I want to sign up for.

I think this is a better plan for our mental health.  Because I know the results are mixed I can absolutely see in three or four or ten months into this thing we will have moments of "This is stupid!  Why are we even doing this?"  Being in a trial that may help pave the way for better treatment will help us in those moments.  That thought won't necessarily help Rachael but avoiding the 96 extra shots would get her vote.

Then there is the fact that we can always opt-out of the trial but we only have one chance to opt-in.

There is just the one big down-side to all this and that is we cannot do any of our treatment at our local children's hospital.  It must all be done in Houston which means of course the temporary move there for the month and frequent trips (probably once a month with a few overnights here and there) for the next year.

This is going to be hard but I have to say, after my experience in a different - albeit wonderful - hospital, I am honestly really relieved that we won't be splitting her treatment.  I know our local hospital is very good and I've heard great reports and if we had started here I probably wouldn't want to go anywhere else.  I just feel better doing it all at MD Anderson.  It's our hospital.

So, we're working things out and making arrangements and it looks like I will go there on the evening of November 11th.  We have the opportunity to meet another little Melanoma Warrior, Chloe, who is 10 years old and was diagnosed when she was 8.  I hope we can have dinner and give the girls a chance to play that evening before they return back home on the 12th.  On a side note, we are very excited to be sending out Christmas cards this year designed by Chloe!  Her angel was chosen this year by the Children's Art Project.

On a completely different note, while the kids were getting ready for school yesterday Marc kept running into my bathroom asking, "Can Rachael wear my belt?"  "Can Rachael borrow my socks?"  I'm all like, "I don't care," he runs out pumping his fists going, "Yesss!"  I hear them being all giggly and cute and when it's time to leave I see that my very different children who I wasn't even sure liked each a few months ago came out all matchy-matchy.



 They are really going to miss each other.



Tuesday, October 20, 2009

Ownership

We are learning to take the good with the bad.  It's humbling but necessary because otherwise, like my brother described it, we could look back at this time as one bad time followed by one not as bad time.  Rachael is doing very well but every single day there is something we wouldn't be doing or even be thinking about if not for melanoma.  I am finding I need to remind her more often that her life is not bad and there are many blessings.  Like dancing with Daddy at a jazz festival.  Or not losing her hair.

Something that is hard for any child, and especially one going through somewhat invasive medical treatment is the lack of control.  She tells me every day that she WILL NOT EVER have another shot again.  Or that she is going to simply refuse to do any more dressing changes and she is very firm that interferon is simply not going to happen.  She knows that she has no control but she likes to say it.  Tonight she told me again that the answer to something upcoming is "No," and when I told her that she doesn't really have a choice she smiled and said, "I know that, I just like saying no."

Good for her!

I love that that is one of her coping mechanisms.  Even though I know I have no control whatsoever, I am going to pretend I have a choice and exercise it.  I'm going to totally use this.  "Hey Rachael, let's just walk in together this morning and refuse the medicine.  Let's tell them that we quit and run away fast before they catch us!"  I should have recognized this sooner because even when she was at the height of misery her first day with the staph infection and begging, BEGGING to leave I looked at her and said, "Should I just unhook all this stuff real quick and we'll make a run for it?  Those doctors look slow, I bet they can't catch us."  She was so miserable but there was a twinkle in her eye at the thought of it.

I believe she's learning that though the things happening to her don't make sense, there is a necessary purpose and so I think that if I really did try to unhook her and make a run for it, she would stop me.

So that takes me to this incredible program offered at MD Anderson and many other hospitals around the world called Beads Of Courage.  The concept behind the program is that "Every bead tells a story of strength, honor and hope."  From their website:

What is the Beads of Courage Program?
The Program is a resilience-based intervention designed to support and strengthen the protective resources in children coping with serious illness. Through the program children tell their story using colorful beads as meaningful symbols of courage that commemorate milestones they have achieved along their unique treatment path.

how it works

Upon enrollment each child is given the Beads of Courage bead color guide with a detachable membership card. Their Beads of Courage journey begins when each child is first given a length of string and beads that spell out their first name. Then, colorful beads, each representing a different treatment milestone are given to the child by their professional health care provider to add to their Beads of Courage collection throughout their treatment as determined by the Beads of Courage Bead Guide (available from Beads of Courage, Inc.)

I cannot say enough how much I love this program.  Rachael doesn't have any control over what is being done to her body right now and a lot of it is very confusing.  But with a simple bead she gains understanding, a sense of ownership and a visual representation of her own cancer journey.  I won't go over each bead and what they all mean but I can tell you this... If you ask Rachael, she knows. 

I'll be honest and say it does not make getting a shot or doing a dressing change easier but as her beads grow I see in her a sense of accomplishment.  It goes from "It happened to me." to "I did it!"

And that is a gift.